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Old 05-04-2011, 03:10 AM   #3
Join Date: May 2011
Location: Pittsburgh PA
Posts: 1
amyrinPA HB User
Re: Very long, yet very desperate!! Pernicious anemia, b12 def., iron def. anemia

Wow! They have taken a very long time to give you a proper work up. I recently switched doctors because my former doctor was useless. A few weeks after meeting her and initial physical I became extremely fatigued to the point I fainted several times over a three day period (I fainted as I checked into the ER and several times the next two days). Despite fainting I had to insist that they try to figure out what was wrong with me. They hospital just wanted me to go home since my heart and lungs are working fine. Like that's all there is to a person: a heart beat and respirations. They did some tests in the hospital, Mysthenia Gravis and others. Everything coming back negative. They shoved me into a nursing home to get rid of me. Luckily, I gained enough strength to be allowed to go home. I'm still not home yet, I'm staying with my honey since I have days I can't hardly pour a glass of water and carry it.
Let me know how your tests come out, I hope they find something. It sounds like we have similar problems. Often I have decreased feeling/numbness of loss of feeling in fingers and lips and nose. For about a month, when I woke up in the morning I am numb from elbow down and thigh down. I think that is fading now though. I've had the problems with my lips and nose for years, but they dismiss them all the time. No doctor wants to deal with it. I'm so angry that nobody checked my B12 levels when I first started having the numbness problems twenty years ago. The numbness in my hands though, that is troubling, because at times it is very hard to get things open or hold on to things. I have some problems with weakness in one hand so the numbness just makes it worse.

What do your hands feel like? Numb and tingly? Do you have numbness anywhere else?
Mine just feel like they felt when I had lost a lot of fluids from a severe stomach flu. Like they aren't getting enough blood flow. It takes more effort to do things and they are less sensitive. The problem with my hands and forearms started with the fatigue and then my legs started getting involved too.

I will be going to get the blood tests tomorrow. I saw a Neurologist on Monday for my involuntary movements issue which has been getting worse the last couple years (my previous doctor wouldn't refer me for it!!). She was very thorough and wants to do blood tests for some rare disorders that could cause movement disorders and also any disorder that could cause the fatigue and movement problems. I like how she thinks of the body as a whole and not just concerned with neuro things.

I also have problems with food allergies, vertigo and I'm very motion sensitive. I trigger (convulse) to strobe lights and other flashing things. Since I have all these other issues, I don't get too anxious about the fatigue. I've known something is not right for a long time, like you, I wish they would have started sooner before I got this sick. Don't you wish they would just listen the first time? I hate how specialists really don't listen well until your third of fourth appointment. Initially, they just want to say, this is not my department and bat you back like a tennis ball. When I have to keep coming back because the problem is not better, then they pay attention. Ugh!

I hope you have good, responsive doctors now. I seem to have some great ones now. Especially my new internist!

The following user gives a hug of support to amyrinPA:
iwillgtwell (05-06-2011)